Mojdeh Mostafavi, MD, shares her deeply personal journey as a sibling supporting a loved one with profound autism. She describes her experiences from early childhood through adulthood, highlighting the challenges and triumphs that her family and care team have experienced. The speaker shares ten meaningful insights about her family’s journey, highlighting the importance of communication and advocacy from a very young age. Mostafavi emphasizes the complexities of ever-evolving sibling relationships before the Q&A. 

In this webinar

2:00 – Introduction
4:30 – Early life, diagnosis, and family response
9:00 – The role of siblings and at home care
14:05 – Behavioral challenges during adolescence
17:00 – Adulthood milestones and medical crises
21:30 – Ongoing care and the unknown future
23:00 – Welcome to Holland – a sibling’s perspective
27:00 – Ten reflections from an adult sibling of someone with profound autism
34:00 – Communication challenges and triumphs
43:00 – Family, community, care teams — the importance of support
47:40 – Q&A

Early Life, Diagnosis, and Family Response

Mostafavi’s brother was born in 1995, when she was just two years old. During pregnancy and early infancy, his development seemed uncomplicated. However, at around 18 months, their parents, both medical professionals, noticed a profound developmental regression. He began losing words as he learned new ones, stopped responding to his name, started to avoid eye contact, and exhibited classic stimming behaviors like lining up toys, hand flapping, and finger twisting. The speaker explains that this regression occurred within a five-or six-week period, during which his preschool teacher suggested they get an autism assessment (4:30).  

In 1996, her brother was diagnosed with autism; this was a traumatic experience for her parents, who received a largely negative prognosis. Her parents recall being told that he would likely never speak or live independently and that many strongly suggested institutionalization. Mostafavi reminds viewers that during the mid-1990s, autism prevalence was reported as 1 in 10,000, so there was very little understanding or resources available (7:00). Undeterred, her parents embarked on a journey of self-education, extensively researching interventions and support strategies. They successfully pioneered a home-based program to address their son’s profound needs in an area with few specialized services.

The Sibling’s Role: Integration and Transformation

Growing up, Mostafavi’s life was intrinsically linked to her brother’s care. Their home was a hub for various therapies, including occupational therapy (OT), speech-language pathology (SLP), and ABA. From a young age, she was actively involved in these sessions, often tasked with modeling behaviors or assisting therapists. The speaker emphasizes how this deep involvement made her feel valued and important, which mitigated feelings of being a “glass child” and fostered an understanding and supportive sibling relationship (9:00). It was in her elementary years, around ages six to eight, that she first recognized the unique differences in her family life compared to her peers (12:00). 

Adolescence and Behavioral Challenges

Adolescence proved to be an exceptionally challenging period for her brother, particularly due to his limited verbal communication skills and subsequent difficulty expressing his needs and emotions. These challenges often led to intense behavioral outbursts, primarily aggression, including hair pulling, scratching, and biting, usually received by herself or her mother (14:05). Mostafavi underscores that her brother showed remorse after such outbursts, highlighting not only their close bond, but also the lasting distress externalized behaviors can have on everyone involved. The hormonal shifts of puberty further complicated her brother’s ability to self-regulate. The presenter recalls the incredible support they received from her brother’s care team and how they assisted in navigating this challenging moment for their family (15:00). Mostafavi notes her brother’s naturally loving disposition, stating that, even in these hard moments, 95% of the time, it was just awesome. It was that 5% where he struggled with communication that would result in aggressive behaviors.

Adulthood and medical crises

Mostafavi highlights that her experience differs from many because all the support systems they had took place in their home. During early adulthood, her brother reached many key milestones, like going to the movie theater, getting his first hair cut at the barber, and getting his wisdom teeth removed (17:00). The speaker briefly describes the first severe medical crisis her brother had when he was 27, which led to hospitalization and an induced coma. The cause was eventually traced to severe, unexpressed pain, leading to extensive medical evaluation and ultimately a diagnosis and intervention. The presenter comments on how disruptive it was to the entire family to be unable to manage and care for her brother at home. This process forced the family to reassess their resources, their son’s evolving needs, and the family’s well-being. It was a transformative period that instilled a deeper sense of awareness and appreciation for the ongoing challenges of supporting a loved one with profound autism (20:00).

Her brother remains at home with their parents, benefiting from a consistent care team, some of whom have been involved for over a decade. While aggression has subsided, he still experiences self-injurious behaviors, mainly head-hitting, often linked to unexpressed pain. The family is actively working with his medical team to mitigate these symptoms and behaviors. Despite these ongoing challenges, a home-based program with his long-standing care team remains the most effective option for his needs (21:30).

Reflections on the complexities of being a sibling

To articulate the sibling experience, the speaker references Emily Pearl Kingsley’s poem, Welcome to Holland, originally about the parental journey of having a child with special needs. Mostafavi adapts this analogy to the sibling perspective, explaining that a child growing up in “Holland” (a life with a sibling with autism) doesn’t initially understand the concept of “Italy” (a typical life). As they grow, they begin to recognize differences and form their understanding of the world, realizing that “Holland” is the only life they’ve ever known. This perspective highlights that the complexity and evolution of their unique life journey only become fully appreciated in adulthood (23:00). 

The speaker provides ten insights/reflections on her experiences as a sibling of someone with profound autism. She emphasizes the multifaceted and ever-evolving nature of the sibling relationship, explaining that their dynamic constantly shifts as both individuals navigate life stages—childhood, adolescence, and adulthood. For Mostafavi, this role often includes aspects of caregiving and, in the future, the role of guardian (27:00). She clarifies that her experience doesn’t align with the “glass child” concept because of her deep integration into her brother’s care, which made her feel valued. However, she acknowledges the profound and complex emotional and psychological impact, including feelings such as hurt, anger, guilt, frustration, love, sadness, and grief. All of these require continuous coping strategies even today (30:00). 

A significant aspect of the speaker’s experience is the unique “language” or means of communication she shares with her brother and sister. Living with someone with substantial verbal communication challenges has honed her ability to understand and interpret non-verbal cues (34:00). She touches on the importance of advocacy and empowerment from a young age and the complexities of planning for the future (40:00). Mostafavi asserts the importance of finding “your people” and navigating social life and relationships. The power found in people who support, nourish, and understand the nuances of your life cannot be understated (43:00). The speaker ends by reminding viewers that these are her experiences and that this may look different for everyone. During the Q&A, she discusses therapy for siblings and much more (47:40). 

Originally published on January 6th, 2025

Francesca Solmi, Ph.D., discusses the intricate link between autism and eating disorders. She outlines common eating disorders, noting their overlapping symptoms and similarities to autism traits. The speaker explores potential mechanisms for the connection between eating disorders and autism, including communication difficulties, sensory sensitivities, and emotion regulation. Solmi emphasizes Avoidant/Restrictive Food Intake Disorder (ARFID) and its relevance to autism, underscoring the need for more research and services for this often overlooked condition. The presenter considers future research directions before the Q&A.  

Handouts are online HERE

In this webinar:

1:30 – Common eating disorders
8:00 – Autism and eating disorders
11:00 – Trajectories of autistic traits and eating disorders
20:00 – Potential linking mechanisms
28:00 – Emotion regulation
34:50 – Avoidant/Restrictive Food Intake Disorder (ARFID) and Autism
40:00 – Future research
42:00 – Q&A

Overview of Eating Disorders 

Solmi defines eating disorders as severe psychiatric conditions that typically emerge in early to mid-adolescence. She describes common eating conditions, including Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, and OSFED (Other Specified Feeding or Eating Disorder), highlighting the significant symptom overlaps across conditions (1:35).

• Anorexia Nervosa – frequently the youngest age of onset. Characterized by an intense fear of weight gain, extreme dietary restriction, and often low body weight. Some individuals may also engage in bingeing and purging.
• Bulimia Nervosa – slightly later onset and involves episodes of binging followed by compensatory behaviors like self-induced vomiting or excessive exercise.
• Binge Eating Disorder – the most recently recognized diagnosis. It involves bingeing without compensatory behaviors, often accompanied by feelings of shame or guilt.
• OSFED (Other Specified Feeding and Eating Disorder) is a residual category for individuals whose symptoms don’t fully meet the criteria for other diagnoses. 

The speaker emphasizes the severity of these conditions, noting their association with higher mortality rates (5:00). Despite this, eating disorders are often under-researched compared to other mental health disorders. She also notes their high prevalence in girls and women, suggesting underdiagnosis in men (6:30).  

The Link Between Autism and Eating Disorders 

Solmi discusses the connection between autism and eating disorders. A study by Westwood and colleagues revealed elevated autistic traits in people with anorexia nervosa. Similarly, people with autism and anorexia nervosa mentioned rigidity or rules, intense interests, difficulties recognizing hunger, and social difficulties (8:00). A significant challenge in this research, the presenter explains, is distinguishing between pre-existing autistic traits and those that may be mimicked by severe malnutrition in anorexia nervosa. 

Autism Spectrum Disorder in Anorexia Nervosa: An Updated Literature Review (Westwood et al., 2016)

Research on Autistic Traits and Disordered Eating Trajectories

Solmi presents findings from a study investigating whether autistic traits were present before the onset of disordered eating behaviors (11:00). Researchers found that children who later developed disordered eating behaviors exhibited higher levels of autistic traits at age seven, and these differences persisted throughout adolescence. The speaker asserts that these findings suggest autistic traits may precede the onset of disordered eating (17:00). The study also revealed that more severe eating disorder symptoms correlated with higher autistic trait scores from age seven onwards, indicating a strong association with more severe presentations of eating disorders.

Trajectories of autistic social traits in childhood and adolescence and disordered eating behaviours at age 14 years: A UK general population cohort study (Solmi et al., 2020)

Potential Mechanisms Linking Autism and Eating Disorders 

The presenter explores several mechanisms as potential links between autism and eating disorders. For example, as friendships become more important in adolescence, struggles with social interaction can exacerbate mental health difficulties, with eating disorders potentially serving as a coping mechanism. Children with social communication difficulties may also be more susceptible to bullying, which can lead to internalized weight-stigmatizing thoughts and behaviors like dieting (20:00). Young people with autism often exhibit more sedentary behaviors compared to their peers, which can increase BMI and vulnerability to weight-based stigmas (23:00). 

Emotion regulation difficulties are also common in both autism and eating disorders. Solmi outlines a recent study showing that individuals who later developed anorexia nervosa symptoms exhibited less improvement in emotion regulation skills from early to mid-childhood compared to their peers, where differences emerged around age five (30:00). Further, in girls, social cognition explained around half of the association between emotion regulation difficulties and disordered eating. The association in boys was less clear, likely due to smaller sample sizes (35:00).

The presenter notes that sensory sensitivities, a core aspect of avoidant/restrictive food intake disorder (ARFID), are frequently reported by people with anorexia nervosa. For example, in a qualitative study on autism and anorexia in women, emerging themes included difficulty with sensory sensitivities, social interactions and relationships, and challenges with emotions (33:00). 

A mixed-methods approach to conceptualizing friendships in anorexia nervosa (Datta et al., 2021)

Autism Spectrum Disorder and Obesity in Children: A Systematic Review and Meta-Analysis (Sammels et al., 2022)

Emotional dysregulation in childhood and disordered eating and self-harm in adolescence: prospective associations and mediating pathways (Warne et al., 2022)

“For Me, the Anorexia is Just a Symptom, and the Cause is the Autism”: Investigating Restrictive Eating Disorders in Autistic Women (Brede et al., 2020)

Avoidant/Restrictive Food Intake Disorder (ARFID) and Autism

Solmi discusses ARFID, a disorder now included in the eating and feeding disorder family, noting its relevance to autism. Its three main aspects include limited interest in food, sensory sensitivities (e.g., avoiding specific foods due to texture), and concerns about adverse consequences from eating (34:50). The speaker emphasizes the limited epidemiological research on ARFID, the lack of services (especially for people who are not severely underweight), and the need for more studies to understand its prevalence, risk factors, and effective treatments (37:00).

Future Research Directions 

According to the presenter, future research should aim to understand the complex links between autism and eating disorders more comprehensively. Key areas of investigation include the connections between sensory sensitivities and ARFID, gender differences in the association of autistic traits and eating disorders, links between other autistic traits and different eating disorder presentations, physiological factors like the gut-brain response, and age of autism diagnosis in those with and without eating disorders. These avenues of research, Solmi asserts, will improve diagnostic tools and help to develop better prevention and care strategies (40:00). The speaker summarizes main points before the Q&A (42:20). 

April 15, 2025

The prevalence of autism among children in the United States was updated this week, with the latest data from the U.S. Centers for Disease Control and Prevention (CDC) estimating that 1 in every 31 children was diagnosed with the condition in 2022. This marks a continued upward trajectory from the CDC’s prior estimate of 1 in 36 children in 2020.

One report found that 1 in 36 8-year-old children have been diagnosed with autism, according to 2020 data from 11 states.

• The CDC reported shifts in racial and ethnic disparities in autism prevalence – for the first time in years of CDC data collection, non-white children are identified as having autism at higher rates than white children;
• The findings represent a nearly 20 percent increase over the 1 in 44 estimates based on 2018 data;
• As in the past, among racial groups, Black children with autism and co-occurring intellectual disability are identified at significantly higher rates — suggesting that some Black children without intellectual disabilities are too-often missed;
• Autism is nearly four times more prevalent in boys; among girls, prevalence is 1 in 88.

This latest announcement underscores the urgent need to invest in peer-reviewed, biological research about co-occurring conditions and autism and appropriate medical care for individuals across the spectrum. As science continues to reveal the complex and diverse nature of autism, it is clear that targeted funding is urgently needed to support the researchers and clinicians working on the front lines of investigation.

Since 1995, the Autism Research Institute (ARI) has brought together leading experts to explore the biological underpinnings and co-occurring medical conditions associated with autism. We proudly stand with others in the autism community in calling for sustained and meaningful investment in research that safeguards the health of autistic people.

You can help move research forward

You make a difference and help come up with information and solutions that have a direct impact on improving the health and well-being of people with autism. 

Beth Malow, MD, shares current research updates on sleep and autism. She highlights the multifactorial nature of sleep patterns and how they affect daily functioning and core autism traits like emotion regulation. The speaker provides helpful sleep questionnaires and tips for minimizing sleep resistance and night waking. Malow outlines preliminary work from ongoing sleep education trials for parents and therapists and emphasizes the efficacy of behavior-based interventions. She provides contact information for potential study participants and notes the lack of research surrounding common medications before the Q&A. 

• Handouts are online HERE
• Articles on melatonin are HERE
• Interested in participating in research at locations described i Save n the webinar? Email the research team at sleeped@vumc.org

In this webinar:

1:00 – Introduction and case study
6:45 – Multifactorial sleep problems
12:13 – Emotion regulation and sleep
17:20 – Parent trainings for insomnia
23:00 – Sleep resistance and night waking
29:30 – Sleep education multicenter trials
36:30 – Medications
37:45 – Summary
39:00 – Q&A

Sleep in Autism

Dr. Malow notes the high prevalence of sleep problems in autistic children and how they impact both nighttime rest and daytime functioning (1:00). Various factors contribute to sleep issues in autism, which can generally be divided into biological, medical, and behavioral categories (7:45). 

Case Study

To illustrate the multifactorial nature of sleep issues, Malow presents a case study of Alex, a 10-year-old boy with autism, epilepsy, and anxiety. It takes him hours to fall asleep because he “cannot shut his brain down,” and he takes methylphenidate (Ritalin) in the morning and afternoon and lamotrigine (Lamictal) at night. Alex enjoys a soda and video games after dinner. He has restless sleep, snores loudly, and wakes multiple times at night. It’s also nearly impossible to wake Alex up in the morning for school. His teacher describes him as being sleepy as well as hyperactive in class. All of this leaves his parents exhausted and very overwhelmed (2:40). 

Due to his snoring, practitioners treated him for sleep apnea by removing his adenoids and tonsils. This helped his seizures and snoring, but the restlessness and night wakings continued (6:45). The speaker emphasizes a comprehensive approach to sleep issues that identifies co-occurring conditions, prioritizes behavioral strategies wherever possible, and uses medications sparingly. She reiterates the benefits of routines for people with autism (10:15)

Sleep, emotional regulation, behavior, and core symptoms

All daily functioning is improved when we sleep better; it’s like “hitting the reset button,” especially for emotion regulation. Malow outlines fMRI studies that show increased amygdala activation (fear and anxiety) and decreased connectivity between different parts of the brain after sleep deprivation (12:13). Similarly, in a study with more than 2,500 kids, those getting less than seven hours of sleep per night had higher severity scores for social communication and emotion regulation (15:15). The presenter asserts the significant relationship between sleep and behavior and suggests that if we improve sleep, daytime behaviors will also improve (16:35). 

Parent training for insomnia supports

In 2009, Malow published the Sleep Habits Questionnaire for Children With Autism Spectrum Disorders to help parents and caregivers manage sleep issues in autistic children (17:20). The questionnaire assesses components of successful sleep and daytime habits including exercise, abundant light, limited caffeine, limited naps, and selective bedroom use (using the bedroom only for sleeping) (19:18). The speaker describes the interaction of homeostatic and circadian rhythms throughout the day and emphasizes the importance of having the proper bedtime. For example, in Alex’s case study, 8 pm may be too early for his body to enter sleep mode, so she suggests pushing it back half an hour (21:00). 

Sleep resistance and night waking

For many autistic children, the “crying it out” method doesn’t work because the child doesn’t understand what is going on. If a child needs company to fall asleep, Malow suggests the rocking chair method, where you sit in the rocking chair with your back to the child, moving closer to the door each night until you have left the room (23:00). 

The first step in minimizing night waking is to help the child fall asleep on their own – “A child who can fall asleep on their own can go back to sleep on their own.’. It’s essential to respond quickly to distress and comfort and reassure but avoid over responding – be “brief and boring” (25:00). “Bedtime passes” can also be used as a ticket for a hug or class of water during the night. In this case, the child can use the pass or turn it in in the morning for a reward. This gives the child control over the situation and comfort, knowing they can have help if needed (26:30).

Malow notes that all of these learning materials are available for free at https://www.autismspeaks.org/tool-kit/strategies-improve-sleep-children-autism

Sleep education multicenter trials

Malow outlines a two-phased study in parents of autistic children with sleep onset delay at least 3 nights/week. In phase 1, parents were given sleep education, a pamphlet, or no intervention. In phase 2, parents were randomized into either group or individualized classes with a trained community therapist (29:30). The therapist training portion includes a manual, videos, and weekly Zoom meetings for practice and support. Following training, therapists identify families who could benefit from the program, and after consent is given, baseline assessments are completed. Therapists meet virtually to discuss challenging cases and billing issues (34:44). 

Preliminary results show that therapists achieved fidelity goals during training sessions and that parents achieved high scores in understanding, comfort, and implementation. Sleep patterns and core symptoms improved, and parents were delighted with the training overall (32:55). 

This training is now available in TN, NH, VT, GA, and CO. For more information, email the research team at sleeped@vumc.org

Medications

Malow expresses her reservations about medications due to the many side effects and unknown long-term implications. However, sometimes they are necessary. They can help manage parental overwhelm initially, but it’s good to wean off slowly as behavioral habits are adopted. Gabapentin, alpha-adrenergic agonists (clonidine), and mirtazapine are common medications that have been studied, but most others have not (36:30).

 The presenter summarizes her talk, reiterating the prevalence of sleep problems in autism and their impact on daily functioning. She emphasizes that once the root cause is identified, sleep problems are highly treatable, especially with behavioral strategies. Personalized, family-centered interventions are the most effective  (37:45). Malow touches on future research directions before the Q&A (39:00). 

Originally published March 18, 2025

Dr. Connor Kerns delivers research updates on the intersection of trauma and autism. She describes the relationship between childhood adversities, trauma, and mental health and highlights the need for trauma measurements that are specific to the autism community. The presenter considers the complexities of diagnosing PTSD in autism and details the development of the Childhood Adversity & Social Stress Questionnaire (CASS-Q). Kern’s ongoing work aims to describe the adversities of autistic youth and compare the CASS-Q PR symptom subscale to the DSM-5 PTSD descriptors. She discusses preliminary results revealing high validity and summarizes limitations and implications before the Q&A.

In this webinar:

0:30 – Disclosures and introductions
2:45 – Childhood adversity and trauma
8:00 – Experience vs diagnosis
13:00 – Complexities of diagnosis PTSD in autism
22:25 – Intersection of autism and trauma
24:00 – Childhood Adversity & Social Stress Questionnaire (CASSQ)
28:15 – Stress symptom subscale
35:45 – Preliminary results
40:35 – Adversity history profiles
47:00 – Validity and discussion
50:30 – Q&A

Childhood adversity and trauma

Kerns cites research showing that autistic individuals are more likely to experience maltreatment or adverse childhood experiences (ACE), including, but not limited to, physical, sexual, and emotional abuse, neglect, family or community violence, financial instability, loss of a loved one, and parental mental illness (2:45). The explains how DSM-5 trauma criteria don’t capture the full array of traumatic events. She provides a broader definition of stressful experiences, including any event, series of events, or set of circumstances experienced as harmful or life-threatening and that have lasting effects (4:36).

• Prevalence of adverse childhood experiences among individuals aged 45 to 85 years: a cross-sectional analysis of the Canadian Longitudinal Study on Aging (Joshi et al., 2021)
• Disability and maltreatment (Merrick et al., 2018)

Kerns emphasizes the broad array of adverse experiences that can result in trauma, which are not included in the criteria from the DSM-5. She outlines research showing a positive correlation between the number of adversities and risk for mental and physical health conditions (6:30). Interestingly, research does not consistently point to an increased prevalence of PTSD in people with autism. The speaker cites a study that found that 28% of 350 youth with autism reported a history of maltreatment, with only 2.6% having a PTSD diagnosis (8:25). Kerns summarizes research showing that autistic people are more likely to have mental health difficulties and that adverse experiences contribute to mental health issues and other trauma symptoms. However, to date, very little research has been conducted on this intersection. 

• Relationship of Childhood Abuse and Household Dysfunction to Many of the Leading Causes of Death in Adults: The Adverse Childhood Experiences (ACE) Study (Felitti et al., 1998)
• Rates of post-traumatic stress disorder in trauma-exposed children and adolescents: meta-analysis (Alisic et al., 2014)
• Traumatic Events and Posttraumatic Stress in Childhood (Copeland et al., 2007)
• Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis (Lai et al., 2019)
• Examining Rates of Traumatic Events and Posttraumatic Stress Disorder Symptoms Among Autistic Adults (Andrzejewski et al., 2024)
• Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions (Haruvi-Lamden et al., 2020)
• Experience of Trauma and PTSD Symptoms in Autistic Adults: Risk of PTSD Development Following DSM-5 and Non-DSM-5 Traumatic Life Events (Rumball et al., 2020)

Complexities of assessing PTSD in autism

To adequately address the assessment of PTSD in autism, we have to assess what “counts” as a traumatic event and ensure that we are measuring accurately (13:00). In a 2022 study, researchers conducted interviews with caretakers and people with autism about what they feel is traumatic. Findings highlight the need for additions to DSM criterion that include issues like social exclusion (bullying, isolation, stigma, restraint, loss of autonomy/opportunity) and traumatic incongruities (sensory trauma, reactions to change, social burnout) (14:30). Research also shows that DSM PTSD criteria lack cognitive, behavioral, and physical considerations associated with autism and that assessments rely too heavily on verbal expression (18:00). Behavioral overlap between traumatic symptoms and characteristics of autism, like emotional outbursts and social isolation, also make it difficult to diagnose. Kerns reiterates the need to approach the construct of traumatic stress and its assessment with care and intent (20:00). She warns that autism can overshadow PTSD, but there is also the potential to over-pathologize autism.

• Expert consensus regarding indicators of a traumatic reaction in autistic youth: a Delphi survey (Kerns et al., 2022)

Intersection of autism and trauma

Kerns breaks the experience of trauma down into three phases: 1) adversities, 2) experience appraisal and effect, and 3) traumatic reactions. She describes a 2015 study that proposed autism may influence the type and amount of adversities youth experience as well as how they appraise and respond to those experiences, including their susceptibility to and expression of PTSD. Results showed that being autistic changes the rate and type of adversity, affects how one experiences them, and dictates which experiences will have lasting psychological distress. The speaker highlights that autism changes the way PTSD is expressed, underscoring the need for a measure tailored to the autism community  (22:25). She lists publications that show how autism moderates each phase of trauma: 

 Criterion/adversity events: 

• Disparities in adversity among children with autism spectrum disorder: a population-based study (Berg et al., 2016)
• Traumatic Childhood Events and Autism Spectrum Disorder (Kerns et al., 2015). 
• Brief Report: Examining the Association of Autism and Adverse Childhood Experiences in the National Survey of Children’s Health: The Important Role of Income and Co-occurring Mental Health Conditions (Kerns et al., 2017)

Traumatic event experiences:

• Child maltreatment in autism spectrum disorder and intellectual disability: results from a population-based sample (McDonnell et al., 2019)
• A population-based examination of maltreatment referrals and substantiation for children with autism spectrum disorder (Fisher et al., 2019)
• A Systematic Review of Polyvictimization among Children with Attention Deficit Hyperactivity or Autism Spectrum Disorder (Hellström, 2019)
• Exploring potential sources of childhood trauma: A qualitative study with autistic adults and caregivers (Kerns et al., 2022)
• A Systematic Review of the Assessment and Treatment of Posttraumatic Stress Disorder in Individuals with Autism Spectrum Disorders (Rumball et al., 2019)

Traumatic stress outcomes:

• Identification of Post-Traumatic Stress Disorder in Individuals with Autism Spectrum Disorder and Intellectual Disability: A Systematic Review (Kidahl et al., 2019)
• Anxiety and Trauma-Related Disorders in Children on the Autism Spectrum (Ng-Cordell et al., 2022)
• A Systematic Review of the Assessment and Treatment of Posttraumatic Stress Disorder in Individuals with Autism Spectrum Disorders (Rumball et al., 2019)
• The Effects of Psychological Trauma on Children with Autism Spectrum Disorders: a Research Review (Mehtar & Mukkages, 2011)

Childhood Adversity & Social Stress Questionnaire (CASS-Q)

The presenter introduces the Childhood Adversity & Social Stress Questionnaire (CASS-Q), which measures adverse (stressful or traumatic) experiences and trauma symptoms in autistic youth via parent and self-report surveys. She details the mixed-method development approach for the CASS-Q and provides an overview of the CASS-Q PR (parent)  (24:00). Kern’s ongoing work aims to describe frequencies and characteristics of adversities in autistic youth and examine the extent to which CASS-Q PR symptom subscale reflects DSM PTSD descriptors (32:15). In her study, 729 parents took an initial query for trauma and those who reported ongoing trauma symptoms (n=298) completed the CASS-Q PR traumatic stress symptom subscale. Subscale items focus on changes in functioning following an event and include DSM domains and suicidality, regression of skills, increased self-injurious behavior, and increased reliance/reassurance seeking (28:15). All 729 parents also completed a 20-item adversity questionnaire measuring the frequency and impact of seven (7) autism-indicated and thirteen (13) traditionally-assessed adversities (31:00).

Preliminary results

Results show the most common adversities include bullying, death of a loved one, and many of the autism-indicated adversities like sensory stressors, being talked down to and made to feel like they don’t belong, being distressed by a continual change in daily life, and meltdowns and anxiety/hopelessness following social interactions (35:45). Adversities with the largest relative impact were not the most prevalent, underscoring the complexity of trauma in autism (38:00). Kerns notes that both traditional and autism-related adversities were positively correlated with behavior problems and outlines three profiles of adversity history: Low-level (~45%), Moderate (~47%), and Complex (~8%) (40:35) Parents who completed the symptom subscale reported the same types of adversities at a higher rate of occurrence (6 vs 3).

Kerns asserts that trauma in autism seems to fit the DSM 5 criteria, with some additional symptoms. In autism, she continues, we see many of the same criteria clustered in slightly different ways and with elevated reactivity. The speaker provides evidence for convergent and discriminant validity (47:00). 

Conclusion

Kerns asserts that these findings provide initial support for the validity of the CASS-Q measure. Some of the autism-nominated symptoms were the most likely to be endorsed and have the most impact, supporting the measurement’s capacity for tailored approaches. She underscores that bullying was the most common detrimental adversity affecting this group (48:00). Study limitations and future directions are outlined (49:00) before the Q&A (50:30).

Jennifer Frankovich, MD, MS, dives into the intersection of infection, inflammation, and mental health. She discusses the increase in recognition of this critical overlap over the last decade, highlighting how systemic inflammatory conditions have the highest rate of co-occurring psychiatric disorders. The speaker outlines ten inflammatory diseases that frequently co-occur with mental health conditions, including spondyloarthritis, psoriasis/psoriatic arthritis, Behçet’s Syndrome, Sjögren’s disease, Scleroderma, CNS Vasculitis, Sydenhams’ Chorea, and Lupus. Frankovich underscores the connection of Streptococcal infections to many of these inflammatory conditions, noting their similarities to PANS and challenges with diagnosis. She provides thanks and acknowledgments before the Q&A. 

This is a follow-up to our June 12, 2024 webinar featuring Dr. Jennifer Frankovich, Ayan Mondal, Ph.D., and Noor A. Hussein, Ph.D.

In this Webinar

1:20 – Inflammation and mental health
3:50 – Spondyloarthritis (SpA)
11:00 – Psoriasis/Psoriatic Arthritis
16:05 – Behçet’s Syndrome
19:25 – Brain parenchymal disease
21:15 – Non-parenchymal disease
22:25 – Sjögren’s disease
24:05 – Scleroderma
25:50 – CNS Vasculitis
26:25 – Sydenhams’ Chorea
37:00 – Erythema Marginatum
38:50 – Strep infections and mental health
42:00 – Lupus
44:55 – Q&A

Inflammation and mental health

Over the last decade, recognition of the overlap between rheumatological/inflammatory disorders and mental health conditions has significantly increased. Frankovich notes common inflammatory diseases that co-occur with psychiatric symptoms, including those caused by small-vessel vasculitis, autoimmune encephalitis, basal ganglia inflammation, and white matter inflammation (1:20). Most commonly, she continues, systemic inflammatory conditions like psoriasis/psoriatic arthritis, and irritable bowel syndrome (IBS) have the highest rates of co-occurring psychiatric disorders (3:30). She outlines ten (10) specific disorders, how they present, and how clinicians/practitioners can test for them.

The odd couple?—Hardly: The emerging overlap between rheumatology and psychiatry (Taylor & Jain, 2017)

Spondyloarthritis 

Spondyloarthritis (SpA) can cause microscopic spinal inflammation that is not often perceptible on imaging until decades later. It is characterized by pain and stiffness in the morning and after prolonged stationary positions. Frankovich explains that 40% of patients with SpA also experience depression, anxiety, fatigue, and brain fog and that adults with SpA have a higher prevalence of OCD, anger/hostility, and deliberate self-harm versus controls (3:50). The speaker notes that children with psychiatric diagnoses may not be able to articulate pain and stiffness, so practitioners must look for clues such as stiffness walking, axial and peripheral stiffness, iliac pain and tenderness, and specific foot pains. Psoriasis and bowel inflammation also commonly co-occur with SpA. Frankovich underscores the high heritability of SpA and suggests observing parental symptoms when diagnosing children (7:15). 

Psoriasis/Psoriatic Arthritis

Psoriasis and psoriatic arthritis have significant overlap with psychiatric disorders, especially bipolar, depression, and anxiety. The speaker explains that pain from arthritis can seem out of proportion, so patients are often dismissed. Frankovich notes specific ultrasounds that can be used to identify inflammation in discrete areas of the body and reiterates how psychiatric conditions may keep patients, especially children, from complaining of their pain, making a diagnosis even more challenging (11:00). Common sites for psoriasis include behind the ears, on the scalp, around the belly button. She warns against mistaking Onycholysis for fungal nail infections and notes that streptococcal infections can trigger arthritis flares (13:35). 

Behçet’s Syndrome

The speaker describes Behçet’s Syndrome as a multisystem inflammatory disease where 10% of patients have neurological diseases perceptible on an MRI and 40% have psychiatric disorders. Other symptoms can include recurrent oral ulcers, ocular inflammation in the anterior portion of the eye, and potential scarring from genital ulcers. Behçet’s Syndrome is a type of transient arthritis where flareups, often triggered by intense immune responses to infection, can last from one to three weeks (16:05). Frankovich notes that when vascular inflammation is present in both arteries and veins, this nearly always indicates Behçet’s Syndrome. Pathergy, or blistering at the blood draw site, is also a strong indicator (18:25). 

Brain parenchymal disease

Brain parenchymal disease (BPD) is characterized by a subacute onset of multi-focal inflammatory legions, which an MRI can miss if it is not conducted at the time of a new deficit. In many cases, the MRI reflects non-specific white matter changes that do not rule out BPD in and of themselves. Some patients also suffer from headaches, behavior changes, and cognitive dysfunction, which can lead to temporary encephalopathy, seizures, and psychosis. The presenter underscores the importance of early diagnosis and treatment but notes that BPD is difficult to diagnose because legions are temporary and appear in different places each time (19:25). 

Non-parenchymal disease

Non-parenchymal diseases involve the brain’s venous systems. Cerebral venous thrombosis, or severe headaches, must be assessed using imaging that highlights the venous system (e.g., MRV). Non-parenchymal diseases often co-occur with fibromyalgia (18 – 37%), parietal cell autoantibodies, vitamin deficiencies (especially B,) and bowel ulcers or IBS (21:15). 

Sjögren’s disease

Frankovich defines Sjögren’s disease as a systemic rheumatologic condition that often presents with dry eyes and mouth and a lot of autonomic nervous system dysfunction such as altered vascular tone, esophageal contractility (trouble swallowing), cardiac rhythm abnormalities, and neuropathic symptoms (i.e., burning, tingling, or numbness). Co-occurring psychiatric disorders make it challenging to self-advocate. The speaker suggests running a mucosal biopsy of the lip to assess salivary gland inflammation if Sjögren’s disease is suspected (22:25). 

Scleroderma

Scleroderma is a systemic sclerosis that causes widespread vascular dysfunction and progressive fibrosis of the skin and internal organs. Over many years, the speaker explains, a person’s skin starts to harden. Early signs in children include Raynauds (cold, white hands) and abnormal nail fold capillaroscopic. She highlights that manifestation may precede the full disease by years, so it is critical to follow patients closely (24:05). 

Personality structure disturbances and psychiatric manifestations in primary Sjögren’s syndrome (Drosos et al., 1989)

CNS Vasculitis

CNS vasculitis is a very rare type of inflammation focused on the brain. It is perceptible on MRI scans and should be considered when children present with new-onset headaches and behavior changes (25:50). 

The spectrum of CNS vasculitis in children and adults (Twilt & Benseler, 2012)

Sydenhams’ Chorea

Sydenhams’ Chorea (SC) presents with three critical components: emotional lability, hypotonia (weak muscles), and chorea (involuntary, brief, random, and irregular movements of the limbs and face). In children, this can look like continuous restlessness (26:25). Frankovich explains that accompanying psychiatric symptoms are similar to what we see in PANS. For example, 60% of patients with SC have OCD at onset, and 100% have it at relapse. Other symptoms include outbursts of inappropriate behavior or mismatched emotions (easy crying or inappropriate laughing), irrational fears that can lead to delusions, anxiety, personality changes, and night terrors (28:08). Other presentations include difficulty keeping arms up or hyperactive reflexes (33:40). 

The presenter notes that the line between what is and is not SC is very blurry, making it hard to detect and diagnose. One of the earliest studies (1926) notes that, in children, nuanced chorea is always Sydenhams, so practitioners should always treat for strep infection and clear it out of the house. According to the study, emotional lability is the most constant observation, along with extreme personality changes where individuals become aggressive and irritable, which is very similar to how PANS presents (30:00). 

Children often cover up their chorea, so clinicians must actively look for muscle use abnormalities. Simple tests for chorea include the milkmaid’s grip and darting tongue. Because psychiatric symptoms like OCD can start two to four weeks before chorea, children who present with acute-onset OCD should be re-evaluated over at least one month (31:25). The onset of chorea can occur anywhere between one and eight months after a strep infection, meaning that ASO and DNASE titers may be normal during assessments (33:40). 

The presence of acute rheumatic fever can also support an SC diagnosis, but it is not necessary. However, the speaker warns that mild cases of SC without other manifestations of acute rheumatic fever may be mistakenly ascribed to behavior or emotional disorders, restlessness, or clumsiness. She reiterates the need for careful evaluation (36:10). 

Neuropsychiatric Aspects of Chorea in Children (Ebaugh, 1926)

The Prevalence of Neuropsychiatric Disorders in Sydenham’s Chorea (Ridel et al., 2010)

Obsessive compulsive behavior, hyperactivity, and attention deficit disorder in Sydenham chorea (Maia et al., 2005)

High prevalence of obsessive-compulsive symptoms in patients with Sydenham’s chorea. (Swedo et al., 1989)

Obsessive-Compulsive and Related Symptoms in Children and Adolescents With Rheumatic Fever With and Without Chorea: A Prospective 6-Month Study (Asbahr et al., 1998)

Sydenham’s Chorea: Physical and Psychological Symptoms of St Vitus Dance (Swedo et al., 1993)

The Emotional Correlates of Sydenham’s chorea (Freeman et al., 1963)

Mental Symptoms of Acute Chorea (Diefendor, 1912)

Rheumatic fever (Stollerman, 1997)

Erythema Marginatum 

Erythema Marginatum is a rash or skin lesion that occurs in SC and is brought out with heat (warm blankets or bath). Frankovich describes a case study of a 16-year-old with a long history of regressive behavior deterioration. He was initially diagnosed with SC; however, due to a lack of valve involvement, the diagnosis was removed. When he later presented with catatonia, clinicians wrapped him in warm blankets for 10 – 20 minutes and then observed his torso and limbs for rash patterns. The speaker notes that Erythema Marginatum patterns change every few minutes and that no other condition presents with such a rash (37:00). 

Streptococcal infections, inflammation, and mental health

A recent population-based study on the association of streptococcal infection and mental disorders found the primary outcome of strep infections was a diagnosis of mental disorders, OCD, or tics (38:50). The speaker says it can be difficult to know if strep played a role in any child’s behavior, so we must rely on epidemiologists continue educating practitioners about the link between strep and mental disorders, especially OCD. 

A smaller study that compared school strep swabs to behaviors found a high correlation between positive strep throat cultures and the presence of tics, adventitious movements, and problem behaviors. Further, if the strep was recurring, the risk for abnormal movements was increased (40:00). Many animal models have also shown this correlation. 

 Association of streptococcal throat infection with mental disorders (Orlovska et al., 2017)

Relationship of Movements and Behaviors to Group A Streptococcus Infections in Elementary School Children (Murphy et al., 2007)

CNS Autoimmune Disease after Streptococcus Pyogenes Infections: Animal Models, Cellular Mechanisms and Genetic Factors (Cutforth et al., 2016)

Lupus 

Lupus, though a common condition, is relatively rare in children. However, 25% of children with Lupus also have neuropsychiatric symptoms such as headaches (66%), psychosis (36%), and cognitive dysfunction (27%). Similar to PANS, Lupus patients commonly have arthritis, small vessel vasculitis, and high immune complexities. They are also 10 – 15 times more likely to have OCD compared to patients without Lupus (42:00). 

Resources

Frankovich thanks viewers and acknowledges research contributors. For more information on her research, visit med.stanford.edu/PANS. During the Q&A (44:55), the speaker answers questions about diagnosis, overlapping conditions, and much more.

Originally posted on October 1, 2024

Laurie A. Vismara, Ph.D., BCBA-D, R.B.A. (Ont.) details caregiver strategies for building infant social interaction. She introduces the Infant Start Manual, an extension of the Early Start Denver Model. The speaker outlines contemporary research on early-in-life autism support strategies and underscores the need for collaborative, family-centered support tactics for parents and caregivers. Vismara details six (6) infant learning characteristics, how they present, and what caregivers can do to foster these social communication skills during infancy.

Handouts are online HERE (.zip)

In this webinar: 

1:30 – Introduction
6:10 – Infant Start Manual
11:40 – Research findings
17:55 – Infant learning characteristics
20:25 – Attentional flexibility
27:10 – Object use
33:00 – Prelinguistic development
36:55 – Combined, pragmatic communication
42:25 – Speech
47:30 – Social attention and engagement
54:20 – Tips for baby learning
58:00 – Resources

Introduction

Vismara introduces the Infant Start Manual, an extension of the Early Start Denver Model that focuses on infant social interactions (1:30). She highlights the need for innovative, flexible approaches to support strategies that match the needs, goals, and priorities of parents and caregivers. The speaker outlines specific language used in the talk and notes presentation learning objectives (4:20). The vision of the Infant Start Manual is to facilitate families in their caregiving journey with interactive early-in-life topics aimed at infant social communication vulnerabilities (6:10). The manual provides supports through family-centered coaching and does not substitute for a diagnosis, fix, or cure. The Infant Start Model can be accessed freely at esdmonline.com/about in the Encouraging Infant Communication and Play Manual (Rogers & Vismara). Free access is for personal use only and should not be posted online. 

What the research says

Research on the efficacy of early-in-life autism supports is still emerging. Studies show mixed results across high (10-15 hrs/week) and low-intensity (0.5 – 3 hrs/week) supports delivered by parents and clinicians. All studies aim to teach caregiving skills for social and joint engagement through play and other activities. Results show improvements in caregiving domains, infant proximal behaviors, and interactive styles for caregivers. In contrast, infant autism domains show minimal changes (13:00). One pilot study of the Infant Start has been published. Overall, caregivers shared positive perspectives on content and delivery techniques, and infant vulnerability around social characteristics diminished over time compared to families that did not participate (11:40). 

Vismara posits that the cumulative benefits of small initial changes in interaction become more apparent over time, meaning the full impact of these interventions cannot yet be measured. However, these studies provide an opportunity to understand the acceptability of these support mechanisms from diverse caregiver perspectives, which will allow for the creation of individualized, culturally aligned support systems (15:00). 

Autism Treatment in the First Year of Life: A Pilot Study of Infant Start, a Parent-Implemented Intervention for Symptomatic Infants (Rogers et al., 2014)

Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey (Bent et al., 2024)

A Developmental Social Neuroscience Perspective on Infant Autism Interventions (Dawson et al., 2023)

Feasibility and acceptability of a caregiver-mediated early support program, delivered online, for infants at elevated familial likelihood for autism: A feasibility randomized controlled trial (Meera et al., 2024)

The Earlier, the Better? An In-Depth Interview Study on the Ethics of Early Detection with Parents of Children at an Elevated Likelihood for Autism (Jan-Vanaken et al., 2023)

Preemptive interventions for infants and toddlers with a high likelihood for autism: A systematic review and meta-analysis (Hampton et al., 2021)

Efficacy of very early interventions on neurodevelopmental outcomes for infants and toddlers at increased likelihood of or diagnosed with autism: A systematic review and meta-analysis (McGlade et al., 2023)

Parent-Mediated Interventions for Infants under 24 Months at Risk for Autism Spectrum Disorder: A Systematic Review of Randomized Controlled Trials (Law et al., 2022)

Infant learning characteristics

The presenter emphasizes that babies come ready to explore, learn, and respond just as caregivers have intuitive skills to nurture, love, and protect. Both shape and influence the others’ actions, resulting in a communication “dance” of synchronized rhythmic steps and movements. No matter who is leading, both sides must be aware of the other and sensitive to each other’s movements and what they mean (17:55). When there is a “misstep,” the dance may stop, and working to regain that attention and engagement is where the Early Start Manual comes in. Vismara outlines six (6) infant learning characteristics, how they present in infants, and how to strengthen caregiver-baby social interactions. 

Attentional flexibility

Attentional flexibility refers to babies’ ability to pay attention to people, objects, and experiences that they find interesting, even when there are distractions. Babies do this when they pick up and explore objects, move from one toy to the next, watch people doing things, or shift focus when something new is introduced (20:25). Attentional flexibility helps babies gather information, build on their learning experiences, and filter out distractions to stay on task.

The speaker provides play recommendations for supporting attentional flexibility (23:15). She suggests offering toys or materials that encourage exploration and interactive play. Holding pieces to your face and naming or commenting about them before you give them to the baby can help them orient your voice to your face. She suggests helping babies complete goals, adding playful sounds, hand gestures, or body movements to help call attention back to you, and giving babies choices for which objects they want to play with (25:15). 

Object use

Babies are naturally curious about objects, and playing with them allows them to explore, try out new behaviors, express ideas, and receive feedback. Vismara explains that babies develop play through patterns of repeated actions, called schemas, which are constantly changing and overlapping (27:10). During play, she suggests taking turns with the same object(s) to create a back-and-forth dance (baby does, you do – repeat) which encourages skill adoption and lets babies know that you are part of the activity/conversation. It is also helpful to be face-to-face during play, to set up toys and spaces in visually clear ways that are not over-stimulating, and to follow babies’ play before leading with your own (29:10). The speaker provides a resource table with play schema definitions and ideas (31:20).

Prelinguistic development

Vismara explains that baby communication begins with crying, which lets caregivers know the baby is hungry, uncomfortable, or upset. This quickly develops into “talking bodies” communication, where babies use their facial expressions, bodies, actions, and gestures to communicate in many different ways (33:00). We chat back to babies when we name and describe things, hold or point to things, copy sounds and expressions, and add silly sounds, hand gestures, or movements to play routines.

To support prelinguistic development, the speaker again suggests playing face-to-face with the baby and talking about everything. Describe what you are doing as you go through routines and make your own “talking body” stand out to babies with playful sounds and exaggerated facial expressions and movements (34:15). It is important to give babies time to respond and for you to put words to their communication methods (35:35). The presenter shows a resource table with activity ideas for strengthening talking bodies.

 Combined, pragmatic communication

Bundling communication behaviors is a critical step in the infant communication journey. Combining face, body, and voice makes communication more efficient and complex, allowing for information retention, skill expansion, and relationship building. Caregivers naturally encourage bundling when we model back-and-forth conversations with babies. For example, when a baby smiles and makes a sound, a caregiver can comment on what excited them (36:55). Vismara suggests giving babies time to think of what they want to say and going with the communication methods that the baby is naturally using. The speaker suggests starting with any two bundles (voice and body, face and voice, etc.) and being flexible, remembering you can always try again later. She warns against holding out for specific communication bundles and underscores working with the babies’ strengths (39:30). The speaker provides another resource table on encouraging bundling through daily routines. 

Speech

Baby babbling is a universal aspect of early speech development that unfolds across several stages and serves as a stepping stone to first words. Babbling is a continuous string of sounds that express babies’ emotions and desire to talk. They often mimic words and language qualities such as tone, pitch, and accent (42:25). To support speech development, Vismara suggests talking to babies and then pausing for them to listen and respond. It’s essential to interpret the intent of what babies say and to keep the conversation going as long as they wish to babble. Helpful tips include mouthing games, imitating baby, and using props to encourage sounds (44:45). The presenter shares a resource table with activities that encourage baby sounds and potential props that you can use to promote conversations. 

Social attention and engagement

Human beings are born with the need and desire to connect with the people around us. We can see this social-emotional connection through babies’ visual attention to people, desire for attention, and drive to start interactions (47:30). Early signs of the social-emotional journey include turning toward familiar faces, turning away when overwhelmed, following faces or objects, and responding to people in their environment. Caregivers can foster this bonding by pausing an activity to cue a response from the baby. For example, hold out a toy, show the play action, and wait for baby to say, “I like this, do it again” (reach, look, smile, move body, make sound) (50:00). 

The speaker reminds viewers to respect babies’ preferences and that it may take some detective work to find their comfort zone inside activities. It helps to repeat your actions when babies are watching and read their cues for what makes them smile. Tips for finding their comfort zone include changing movement pace, adjusting voice and animation, and moving closer or backing up until they feel comfortable. Once you find their smile, create a predictable routine for setting up the fun and pausing for a reaction from the baby before continuing the action (51:15). 

Tips for baby learning

The presenter reminds viewers to build on babies’ interests and experiences with other ideas only after you can follow their play patterns. Building on their preferences can include showing different ways to play with their favorite toys, increasing interaction, and introducing new toys and songs they may like. She notes that not all ideas are winners on the first try but that bridging their interests with new ideas will create understanding and participation through which their skills can expand. Vismara underscores the importance of active play and urges caregivers to expand their involvement in baby interactions (54:20). 

The speaker reiterates that the Infant Start Model is about supporting families with programs and resources that build off of dynamic, authentic early learning experiences. She asserts the need for researchers, families, and clinicians to think deeply about what early autism care looks like and to listen intently to what families are telling us to create collaborative, culturally-informed strategies (55:41). Vismara provides links to manuals, videos, and other resources as well as an Infant Start workshop for professionals (58:55).

Originally posted on October 8, 2024